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  1. Wondering if anyone who has done IV saline therapy to recover from a crash, or on a regular basis even, could tell me what the amount of saline over what time frame you were treated with is... I hope that makes sense....
  2. Hi Tara, I dont want to post in the forum but would be happy to talk to you about my experience in Montreal...funny, I too am about 2 hours away... just send me a private message if you wish to chat!
  3. I remember having a discussion with someone about how an airplane flight affected their symptoms. Can anybody tell me what your experience during and after a flight has been - did it affect you?
  4. My daughter takes .1mg of Florinef a day. After 3 days, she had improvement. After 1 month she said she would never, ever give up this medication. She has been taking it for a year now. Her doctor told her in May that if she had to double her dose to make it through the summer, she could....but she didn't have to. The effects of the blood volume expansion from the florinef - took her dizzy and lightheadedness away, took her headache down to a normal 'headache' level and eventually a mild level, more blood available to digest her food helped with tummy pain and nausea, aaand the other part of digestion too. She took hers with a meal, usually suppertime until about 3 months ago. It did have some side effects for her and she just prefered to take it at that time of day, because she felt so yucky in the morning anyways. She now takes it in the morning, as she is well enough to eat breakfast - yeah!! We don't test for potassium levels, but we make sure she eats lots of strawberries, bananas, and sunflower seeds.
  5. My daughter has a light sensiivity issue - she hates the first 20 seconds that she steps outside, always shields her eyes and has an instant reaction. We also just learned this week that she cannot tolerate a 3D movie. She had been doing very well for the last month or so, but then put on a pair of 3D glasses to watch an animated 3D movie, and afterwards had a huge crash - dizzy, shaky, very nauseated, and panicky - said she hadn't felt that badly in a very long time. We did our usualy crash-routine, double salt Mcdonalds fries, lots of gatorade and sleep - after a few hours she was back to "normal", or out of crash mode at least. Couldn't figure it out, until she told me she had watched the movie. #lifelesson
  6. It has taken my daughter a year to arrive at a tiny bit of acceptance that she has some limitations that other teenagers don't have. She is so determined, and has told me that 'there is no part of me that wants to sit on the couch all day and drink 6 bottles of water...', and yet many days that is all she can do. I understand how you are feeling. She finally arrived at the conclusion that she cannot continue with regular school, which she was pushing so hard to do because she wants to be around people, and her old friends - and she really has learned who her friends are through all of this. It was a hard decision for her, but I see her coming to terms a bit more with herself. One thing she does have is a minimal part time job, in an air conditioned place, that gives her only a couple of 3 or 4 hour shifts a week. That gives her something to feel good about, gets her out of the house, and gives her some spending money too. The only reason she is able to do it is because of the air conditioning and the short shifts, and she often sleeps most of the day before her shift and then sleeps right when she gets home, but she says it is worth it. Not much help, just understanding how you are feeling.
  7. Thank you. My daughter takes .01 (or is it .1?)mg of Florinef and her cardiologist has recommended adding in 2.5mg of midodrine 3x a day. I trust him with her life, would trust him with anything, just looking for a bit of feedback. I guess I should monitor her blood pressure for the first little bit when we add it in, and see how she feels. She did initially start out with midodrine a year ago when she was diagnosed, but it didn't do enough for her, so he switched to Florinef. Thanks everyone!
  8. Does anybody take Florinef and Midodrine both?
  9. Thank you very much for the kind words. I know when I write, there is always somene who knows exatly what I mean to say, exactly how it feels, and just what to say. Thankful for the board today!
  10. Just wondering how all of you deal with the 'crashes' - the times where your aren't able to manage your symptoms enough to function as you were. My daughter has been home from school for 2 weeks now, feels like her Florinef has stopped working, and is dealing with all of her symptoms all over again almost like it was before diagnosis and medication. And, her period comes next week, and when she realized that, she cried, knowing everything will get even worse. Not sure what brought it on other than stress and warmer weather, but we have managed the warmer weather with air conditioning at home. The first week she was home, when she did have one good day, she hesitated to go to school, because what happens is that she says home for 3 days, sees an improvement in how she feels, and then hates to give up that improvement by going back and putting in a full day of school. And then, she stresses about missing so much school, catching up, how is she ever going to do this next year, what about university etc etc. I am trying to teach her to deal with one day at a time, but it is hard for a 15 year old who has her whole life ahead of her, to watch her peers and friends.... well, you know. I guess this turned out to be more of a vent than I meant it to. I think I was just looking for suggestions. She is eating as much salt as possible, and drinking lots of water and Gatorade. I think I should have her potassium checked, but I am worried that taking even one vial of blood from her will make her even worse. She is sitting instead of laying down as much as she can. I don't have compression stockings for her at the moment, but I did have some and she refused to wear them, I don't mind getting them again but taking her to be fitted today or soon isn't an option really. Am I missing anything.... is there anything more I can do for her right now? Physically or mentally/emotionally, I feel like I'm not doing enough and I just am at a loss. Its so, so hard not to be able to help your child.
  11. I was happy for you when I read this. It feels good when your doctor is willing to acknowledge, listen, and try something new for you. My daughter went from midodrine to Florinef. She hated midodrine and its side effects. With florinef, she did experience an increase in head pain initially, and when she first started taking it she felt a bit 'wired'. She started to take it at suppertime after a few weeks on it, which really helped her adjust to some of the side effects she was feeling. She now takes it anywhere after 11am with food and just finds she tolerates it better that way. Honestly, she went from bedridden and not feeling well 100% of the time in July, then on florinef, to a part time job in August, and back to school in September. She says she will not go off the Florinef for anything. And as far as tummy trouble, for her, it increased her blood volume which allowed her digestive system to actually function, so her nausea really faded alot and her actual tummy pain isn't as bad as it used to be. I am excited for you, and will keep my fingers crossed!!
  12. My daughter takes florinef, and has had some improvement in her symptoms over the past 9 months or so that she has been on it. For the last couple of weeks, and without alot of detail, she hasn't been doing well. I am wondering if your body eventually builds a tolerance to florinef? For those of you that take it, how much do you take and what time of day do you take it?
  13. My daughter tried domperidone and metoclopramide (is that reglan?), with no success. The only thing that helped her tummy was when she started Florinef. She had lots of pain and bloating, constant nausea, and a very full feeling after only a few bites of food alot of the time. I think its because the florinef increased her blood volume, and your digestive system requires alot of blood to function properly. I also encourage her to stick with easy to digest foods - LOW fibre including white bread and white rice - not brown, low fat, minimal dairy, cooked not raw veggies, lean meat... all while trying to maintain high sodium intake
  14. Alyssa, my daughter is the same. Intense itching. No creams, lotions etc help, it doesnt appear to be 'dry skin'. No explanation for it, and yes, she has patches of little red bumps - sort of - because you can feel them but barely see them. She could scratch her legs right off, thats how itchy they are. And, it does seem to only happen at night. I have nothing to offer for help, but if you find anything or learn anything I would love to know!
  15. In starting the Levine protocol, it was never offered to my daughter as a 'cure'. Nor was it suggested that her POTS was caused by deconditioning. She was an athlete prior to her symptoms, and I believe her POTS is genetic. The Levine exercise program has been described and explained to her as a method of hopefully improving some of her quality of life, much like the prescription for florinef has done for her... the prescription is for exercise and hopefully she will get some benefit from it. The benefits of exercise for her as a POTS sufferer have been explained to be improved cerebral blood flow, a circulatory system in top condition, increased blood volume (with chronic exercise), increased strength in her leg muscles which are your 'pumps', and a workout for your autonomic system which gets called to attention every time you exercise. On top of that, maybe she will get some endorphines going, which isn't something that happens often for her. Her program from Dr. Levine is extremely specific, and formulated from her TTT results. We have been advised that she will feel worse before she feels better, and that perseverence is the key. I don't really care whether an astronaut or a doctor designed the program. Perhaps after our experiences with the healthcare system thus far and getting her diagnosed, I should say that I am happy to have a NASA researcher involved! If she gets some improvement in her symptoms and in any small way feels better, he can call her a Grinch all he wants
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